For Participants & Caregivers
The ABC-DS study aims to better understand the connections between Down syndrome and Alzheimer’s disease to help with treatment and prevention.
Why Should I Participate?
If you’re reading this, you care about this fight. People who care are people who can make a difference.
If you are a person with Down syndrome who participates in the study, or their sibling control, you are compensated for your time and travel expenses.
In return, you’re helping drive discoveries for you and your community.
How Big is ABC-DS?
The ABC-DS study has already enrolled almost 300 participants. We’ll continue working with our volunteers while aiming to recruit 550 participants and 50 sibling controls. ABC-DS is committed to recruiting a diverse representation of adults with Down syndrome.
Participants enrolled and counting
Research project requests
Scans (194 MRIs; 130 Tau PETs; 149 amyloid PETs)
The Participation Process
A handful of visits can make all the difference in the fight against Alzheimer’s disease. When you partner with us, your participation will be felt by countless people who will benefit from this important research.
You will return to see us at 16, 32 and 48 months and then at some point later for a similar visit.
Participation in the ABC-DS study involves:
Completing study enrollment and consent forms.
Visiting one of our research sites for a general medical exam.
Providing blood samples.
Completing puzzles and games.
Taking pictures of your brain.
You will also complete questionnaires at each visit.
These are questions your caregiver fills out that provide researchers with information about your activities, abilities and medical history.
Our blood carries many markers and clues that can help identify risk for Alzheimer’s and other diseases. We will do a total of four blood tests over four years. Some of these tests are similar to those you would get in a doctor’s office during a physical. Blood will also be stored to help future researchers asking critical questions related to Down syndrome and Alzheimer’s. Your help now will continue to help research for many years after you are finished participating.
You will play memory games and puzzles–don’t worry, you won’t be graded on these tests!
A lumbar puncture is a safe procedure with minimal discomfort. We take a sample of cerebrospinal fluid (CSF), a liquid that surrounds your brain and spinal cord. This fluid carries important clues about age-related changes in the brain of people with Down’s syndrome.
Brain donation is a medical procedure that takes place after someone passes away. The brain is removed and preserved for medical research on Alzheimer’s in people with Down syndrome. Brain donations are incredibly valuable for scientific knowledge and may lead to better treatments and help countless people in the future. Samples are sent to researchers all over the country, and even around the world and this generous donation lasts decades. Learn more about brain donation here.
Find a Location
All ABC-DS sites are actively recruiting study participants. We have multiple research clinics across the United States and in the United Kingdom that are eagerly partnering with new recruits in the fight against Alzheimer’s disease in Down syndrome.
University of Pittsburgh (Coordinating Center), Pittsburgh, PA
University of Wisconsin, Waisman Center, Madison, WI
Renee A Makuch
University of Cambridge, Cambridge, UK
University of Kentucky, Sanders-Brown Center on Aging & Kentucky Neuroscience Institute, Lexington, KY
Washington University in St. Louis School of Medicine, St. Louis, MO
NYS Institute for Basic Research/Columbia University Irving Medical Center, New York
University of California, Irvine, Irvine, CA
Eric Doran, MS
Harvard Medical School / Massachusetts General Hospital, Boston, MA
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